didn't end for people who don't have time to make up whatever standings they might have had for who they were line and equity and those opportunities aren't coming. that's where we believe it. does anyone want to continue the conversation i'll be signing books. thank you for coming out. [applause] >> thank you so much to jessica and for all of you. she will be here sunny books and we will resume at noon with nikki. thank you so much, what. >> next up in the wisconsin book festival, nikki looks at the genetics behind all members disease. >> hello. thank you for coming today. i name is nikki and i wrote a

book called the inheritance which follows a family centered in north dakota that carries a very rare genetic mutation that guarantees alzheimer's disease. i am really pleased to say that with me today is lindsay's father, dean, was a central figure in my book. lindsay is speaking today, as well, about some of the experiences that her family andna she, personally, have gone through with all timers disease. when i think back to the first time i met members of the demo familyem in 2009 it really feels like i'm reviewing the notes that i took on someone's else's life and we did not know each other and i did not know anything about usas timers disee or how widespread it is or how

lethalal it is and i was just a journalist who is on an assignment in pittsburgh and i went into their hotel room and spent a couple of hours and when i came out it was like i had gone through the looking glass. i was completely blown away by their story and what they were going through and for me i would never be the same. this is why i decided to write a book about them. i learned them quite a few lessons that i would like to sharee with you today in hopes that it would shed light on where we are in this epidemic and that is what it is. public academic. i think it's the public health epidemic over time even though we don't think of it or talk about it all timers disease that way. several members of the family were from north dakota and as i mentioned several of from wisconsin and there are some in colorado, oklahoma, we only so o there spread all over. for those of you who aren't

familiar with the book the facts of their mutation are pretty sobering. people in the family carry this mutation develop alzheimer's symptoms in their 40s and typically they pass away sometime in their 50s. have to mutation your the% chance of handing it off to your children and of the six siblings were the main focus of my book most of them were already parents of the time they learned this news in 2004. so, there are only a few hundred people in this world this mutation and as you might imagine they are extremely valuable research subjects. they are guaranteed to get the disease scientists have been able to watch the biological progression of al all timers in real time by scanning their brains and collating those images against traditional, cognitive test. for this reason and because of

their willingness to be researched test subjects were now at a point in history where we understand alzheimer's and we have better than it since it was discovered. that me the story a double edge sword and was incredibly tragic but at the same time it was extremely inspiring. one of the lessons i learned from this family is that heroes often appear in the most ordinary packaging. this is a family that is middle america as anyone you ever met and their teachers and oil workers and in lindsay's case a physical therapist, an architect, a hairdresser and you name it they are part of society. they do not look like superheroes for what sets him apart in my mind is what they did when they were handed this extraordinary piece of bad luck. they made this collective decision is family that they

would fight back and to give you an idea of what they were up against what they were fighting back was a disease that has been aroundgs probably for as long as human beings have been around in science is known about it since 1906 so more than a century and hasn't done a thing about it has not been able to sell it. it's a medical history. when they were diagnosed in 2004 they really didn't know who was going to help them fight back when they made this decision because alzheimer's research is still relatively new and most of what we have been able to do with this disease has occurred the last ten-15 years. for them it was like walking into battle against a monster that you can't see and you're blanketed and you're holding a stick and you say, well, i don't know who will help you with this but i will fight and if i go down i will go down fighting. to me that courage resonated because even if your monster

isn't alzheimer's i think we've all had her own battles and we share some of them and we don't your others and in those moments when you feel like your back is up against the wall you can relate to what the demoe were up against. i think of lindsay's aunt laurie traveled to for research every year until the point where she entered a nursing home and she was the seven. she was a fiercely independent, funny, capable woman and when i met her in 2009 you wouldn't have known that she had a members. one of the things people don't know about allof timers is this when a person symptoms begin to start to roll and show up more prominently, travel makes them worse. you have difficulty reorienting yourself when you return home and every year that lori came to work for research it was shortening the time that she had left with her daughters and husband and granddaughters. she was giving up the time and

she knew it and she did it anyway. i asked her why and she said because this is my salvation. she did it because she wanted to see her daughters and she wanted to save my sons and she wanted to save your daughters and sons. she knew that what she was doing was not going to help her, the science was not there yet. when she couldn't fight anymore she donated her amazing brain to research further study. i think about dean who isud lindsay's father and when he found out he had the disease he announced that he was going to live his life as well as he could for as long as he could and instead of dwelling on this tragic occurrence in his family he decided to focus on what he could control it everything he had that he was grateful for. so, he takes road trips with son and he danced at lindsay's

wedding and he traveled to australia with his lifelong best friend teddy somewhat opens and last year he went to toronto and in the past summer he went to england to address a national conference withan all summers association to bring attention to this disease. this past spring dean buried his closest sibling who is his brother, doug. doug was 19 months older than dean and on the same day after that funeral when he served as a pallbearer of the actual same day he asked me to sit with him as a nurse injected him with an experimental drug that his older siblings were too late to get. i think about her sister, carla, who did not inherit the gene and there was a time when carla was a homecoming queen and the cheerleader and easily intimidated and she would describe herself as a ditz and all that changed when her siblings were diagnosed. she devoted the rest of her life

to alzheimer's research and she is the one that steered her siblings into the studies and she was a person that i reached out to the idea of a book. without her, you wouldn't know anything i'm telling you and science would not have been able to study the family or this disease in such great detail. the second lesson i learned from writing this book is that in order to succeed you have to fail. i met a lot of brilliant doctors in the course of this research and the funny thing about them was how unassuming they all were. they really did not care about letting you know how important they were. they didn't really care about credit or in many cases even compensation. they cared about was science and what they care about is finding that care. this isn't a glamorous field anm academia is not a place where

anyone goes to get rich. but you do still have to produce in order to survive there. back in pittsburgh there was a doctor named bill clunk and he had been working there since 1987 he studied all timers disease pretty much his entire career. in 1994 he decided that he would take on the holy grail. he would figure out a way to look at all timers in the living brain. so, he spent several years attempting this endeavor and feeling repeatedly. the only project he was working on for all those years, trying and failing, and a lot of his colleagues recognized how important it was to look at all timers in a living brain were quietly on the sidelines but they weren't willing to do it himself because it was very dangerous for their careers and with the easy to lose their job that way.

it was important because up until that point the only way we can look at all timers disease was on slides under a microscope under a person had already died so you don't know too much about how the disease had been progressing and that is one of the reasons why we were not able to make much progress in solving it. doctor clunk had a breakthrough and on valentine's day 2002 he was able to use a radio tracer that he developed in a living person and you get an injection and they do a scan of your brain and it lights up in your brain one of the signatures of all servers disease and he can look at that and developing 15 years before your symptoms ever occur for 20 years and it was a game changer in alzheimer's and it happened because he was willing to fail. i think also of the doctor francisco from midian, columbia

and when he was a man early in his practice he stumbled across another family have the same genetic mutation as the demoe and this particular family is large. doctor spent years studying them and visited by horseback through dangerous territory and he was kidnapped more than once and still remembers of his team and they kept their patient samples cold in river to preserve them. he worked in obscurity for manym years trying unsuccessfully to get anyone to pay attention to what he found but once he to develop this radio tracer to look at all timers and living brain pharmaceutical companies began to develop drugs to target the underlying biology of alzheimer's disease and his work became very valuable because the colombian family like the demoe family offered perfect research subjects. if you're guaranteed to get the disease then you can be tested in euro and find out that you will get it they can start

looking at your brain when you are in your 20s and watch as the disease unfolds and target the disease with experimental drugs designed to prevent it. today the colombian family and the demoe family are part of a -- it's not large because of dealing with small population but they are each part of two different drug trials that run parallel to each other testing drugs that target [inaudible] and the researchers were in charge of the studies are comparing notes and best practices so -based they been able to the preparation and science together. with that i would like to take a break for a moment and introduce lindsay to explain a little bit about her personal experience with this disease and what it has been like for her. lindsay's generation is in a unique position because now they know, unlike their parents, this

is a mutation that is stocking their family tree and the decisions for this generation are very different and i will w let her speak to that. >> i want to thank you all for being here today and supporting this book and having interest in the story and also in my family. it's very encouraging and it's so important for the advancement to find a cure to alzheimer'sse disease. as nikki said my father is dean demoe, the gene for early onset all timers disease. i have a 50% chance of developing alzheimer's in my 40s or 50s. i am 31, married and work as a physical therapist in minnesota. i also have a younger brother who is 28 and a younger sister who is 21 and an equally have a 50% chance for alzheimer's disease. my brother and i have been tested as part of the research study we have chosen not to know our results at this time. most days i would say i'm purposely content not knowing

what that status is because there is no treatment for alzheimer's. other days, if i have trouble finding the right word or can't remember where i put my cookies, i have a little bit of panic and think is this alzheimer's? i think a lot of people are nodding their heads and you had that thought for but most people don't start to think that way until they are in their 50s, 60s, 70s. i've been thinking that since my 20s so there is a little bit of a difference at that point. i was a sophomore in college when my dad tested positive for the gene. our entire family was really certain that he did not have the gene. his two older brothers had tested positive for the gene already and he and his older sister, carla, were in the process of becoming their power

of attorney. he did it more as a formality just to make sure that he was negative to be their best power of attorney. it was a shock to find out that he was positive and eventually a greater shock we found out that five of the six siblings have the gene. when we find out the results i was only 19 and even the thought of being 40 seemed like a lifetime away. my dad wasn't showing any symptoms at the time and after t was to that initial shock i didn't think very much about it. i was busy with college and i went on to grad school and during school i was working two-three part-time jobs and didn't have time to think about it and i didn't for a while. after i finish grad school then i decided i was ready to address my chances of having alzheimer's disease and what can i do about

it now. i enrolled in a dominantly inherited alzheimer's network with diane for observational study as soon as i finish grad school and i went to my first study visit right after i finished taking my boards and right before starting my first job as a physical therapist. while at this visit i found out the results of my boards and those with positive results that i passed, so that was great. but at this first visit it was where they drew the blood to test my genetic status. at that time i was not sure i wanted those results. before i left for that visit i did speak with my dad and asked him about his decision to find out and i asked him if knowing what he knows now does he regret finding out. he told me then that he did regret finding out his status because he, too, was so sure that it would be negative.

so after a lot of thought and consideration i decided that i absolutely did not want to know and that there was still hope that it would be a negative result and i could be at peace with that. so, now a few years later my thoughts change day today whether i want to know. some days i actually do not want to know and other days i feel like i do want to know because it is something hanging over you like a dark cloud. it never really goes away. there are some days where i can go and i can go weeks without thinking about it but then there can be days when that is all you think about. you go back and forth. i am very much a planner by nature and so a lot of times this uncertainty messes with my personality a little bit. there are a lot of things i think about when it comes to finding out my genetic status.

for me the main thing is how it will affect everyone else in my life. i feel like i'm in a place mentally where whether positive or negative and prepared to handle the news and then i would be okay but what stops me from finding out is how it will affect those around me so my husband and my siblings, my parents, my friends finding out just doesn't affect me but affects all of them, as well. my husband is incredibly supportive and he will stand by my decision whether i decide to find out or not and for my siblings i don't necessarily want my decision to affect their decision. being at the older sibling they look at me as a role model and at times follow my path and i don't want to be influencingng their decision. it's a very personal decision whether to find out if you have this gene or not and it's one that has to be done thoughtfully

and independently of everyone else. when it comes to my parents my hesitation there is i'm not sure if they would be able to handle the guilt if it was a positive result. my dad has specifically said in other interviews that he doesn't want us to find out our status because he doesn't want to know. on the other hand if you were to come back negative it could save a lot of worrying and what if for myself and for my family. the other thing i think about what i'm debating if i want to know or not is that if i do have alzheimer's disease might good years will be limited.g i want to make the most of those years. my dad's age of onset was 48 years old so theoretically that would be my age of onset as well. in the last l couple of years i

have tried to worry less about saving money and paying down my loan debt which was really hard for me to do because i'm a planner to do everything this way and you pay off your bills faster so you get that debt pay down. i've instead of trying to find a balance of being financiallya responsible but then taking time for trips or events that normally i would've said no to because they cost too much money. so, whether or not i decide to find out my status i have decided i will try to adopt more of the philosophy of living life to the fullest and taking that time to make memories people that i care about because that is what is important no matter what the test says. i am very, very thankful for tha amazing support system i have with my family and friends. my dad and his siblings have been amazing role models for not only myself but my siblings and

cousins as well. they were given what seemed like a hopeless diagnosis and have risen to the challenge participating in research, countless mris, drug infusion, cognitive test, lumbar punctures and many, many other things all to help their children. very well knowing that it will not help them. it is not a hard decision for me to start the research because they love the way for us all and because of their sacrifices there will be a cure for alzheimer's and there will always be hope for the future. thank you. [applause] >> thank you, lindsay. by this point you might be asking yourself the question that i actually asked myself when i first started. if alzheimer's is so widespread why am i just hearing about it

now? alzheimer's disease was first discovered in 1906 and by the way, the person in whom it was discovered had the same genetic mutation as the demoe family and she was 26 years old when she died. for the next 60 years after that discovery science essentially ignore the disease. they thought it was a rare affliction and different from senility in older people so that allowed alzheimer's to continue unchecked and there was no research funding associated with it. in the mid- 1960s a study proved that senility is actually, in most cases, alzheimer's and a disease impacting millions of people but still the scientific community and the public reallyy didn't give itth a lot of thought. the reality is when we think of a disease as affecting mostly order people we pay less attention in the 1976 the

californian neurologist wrote an editorial for the american medical association that referred to all summers as a major killer. it was this editorial that gave birth to the all drivers association and started building some support for research but probably the two biggest factors that led to us beginning to recognize the severity of this epidemic was these people are living longer and according to the social security administration man who reaches 65 today can expect to live on average until 84.3 years old.oc a woman who turned 65 today can expect to live on average to 86.6 years old and those arene just averages. one out of four will live past the age of 90 in one out of ten won't live past 95 which is wonderful news. we are living longer. until you consider this. for any of us in this room, thee greatest risk factor for developing alzheimer's disease is aging.

once you turn 65 your risk is developing alzheimer's doubles every five years after you turn 85 your risk of developing alzheimer's is close to 50%. that brings me to the second factor i mentioned. on new year's day 2011 first american baby boomer turned 65. every day since then 10000 more people have hit that milestone. there are currently 5 million americans with alzheimer's and internation sixth leading cause of death and kills more people than a breast and prostate cancer combined. it is the only disease in the top ten killers that doesn't have any way to slow down or stop it. by the time we hit the middle of the century in 20 from the we don't find a way to prevent alzheimer's and estimated 13.8 million americans are going to have the disease. if those statistics scare you,

good. i believe wholeheartedly that we as a society need to understand what we're up against. alzheimer's is the most expensive disease in america and even if you're lucky enough to live a long life is never touched by alzheimer's it will impact you because you're going to pay for it. in 2016 the tapper direct cost to our society for alzheimer's was about $236 billion with of the and it cost more than heart disease and cost more than cancer. so, guess who is paying the bill? you and i are. in 2016 medicare and medicaid spent about a hundred and $60 billion on all servers care or about one in every fiveal medicare dollars. by 2050 if we do not find a treatment for it it will be one in every three medicare dollars.

i have told you what the demoe family is doing and what some of the doctors are doing but we all have to be in this fight and were going to make a difference. what do i mean by that? well, in 2015 the government spent $5.4 billion on cancer research, one point to billion dollars on heart disease and and aids. on hiv those investments are paying off because death rates in all those diseases are declining. that same year research funding for alzheimer's was about $566 million with an m. the death rates are climbing and as i pointed out earlier, so are the cost. alzheimer's disease is the medical pandemic over time. it doesn't care about your income and doesn't care about your politics or your education or your religion and doesn't care if you are a celebrity. it's an equal opportunity killer. i do believe that we as human

beings are capable of coming together in defeating it and we have no other choice because whether it is in your family tree or not it will impact you. one of the doctors i interviewed my book was a soviet immigrant vemed dimitri and he is the first person who discovered any germanic mutation the guaranteed alzheimer's. we know about three ofan them. at the time there were more than 20 research teams around the world that were trying to date do the same things as dimitri. there were later other scientist who took credit for his discovery and he doesn't care. this is what he told me. so many people are working on a problem it will be soft. personally, i want to see as many people as possible working on this problem whether they are research scientists or universities that allow them to pursue those answers or their politicians allocating the funding or the superstar like glen campbell who allows his

private pain to be public so people understand what is happening or in ordinary mothers giving up last two years of her life to be a guinea pig for research or a man who subjects himself to experimental research on the day he. his brother because there is a singular goal here and that is to save the world. with that, lindsay and i welcome your questions and i would ask if you are going to ask a question, please come to the microphone in the center. thank you very much. [applause] thank you both for coming up and speaking about this disease levers. lindsay, i especially appreciate your being here because one of

the questions going to ask was how is the family treating this and what do the children think? thank you very much. i am especially interested in alzheimer's because i have five friends that range from 85 to 70 that have alzheimer's. even though they don't all of the same geographic eric one of the common factors as they all smoked. if you know of any research that correlates smoking and alzheimer's? >> that is a great question. thank you. i don't know of anything specific to smoking but we do believe that with, gated diseases alzheimer's has environmental factors, as well as genetic. there is a thought that there is a link heart health and brain health so smoking could be a factor there. it was asked zoning in non-smoking, i am not aware of one but it doesn't mean there is

not one. >> it seems like there has been a change in recent years and how people define alzheimer's or the extent to which they label people with d cognitive impairmt is having alzheimer's. my mother is in a situation where yes, it's clear to us forl several years that she has a cognitive impairment disease but we just saw for the first time her physician labeled it as alzheimer's and i was taken aback because i think i thought of alzheimer's as qualitatively different than simply emery loss and cognitive impairment so do you want to talk how that has shifted in recent years or are you aware of that and -- a.m.yo your experience is a very common

one people will say that i've had several people say to me my family member has dementia but it is not alzheimer's. right. dementia is a catchall explanation or term that almost always describes alzheimer's. there are a few things like a stroke or certain other illnesses that will cause dementia like symptoms but with alzheimer's you're starting to understand more how to detect it in the living brain not just through the scans but for things like blood tests they are developing blood test so you could people to be less invasively and less expensively diagnose alzheimer's and whether that is what happened to your mother or not i don't know but it is typically done through cognitive testing and stand out over time so if her decline was happening over a number of years it's almost always alzheimer's. people don't like to call it

alzheimer's and there was a time when people didn't like to call it cancer, either. does anyone in the remember the term the big c? this is the big a, right? >> how has your situation impacted on your decision of whether or not to have children? >> i knew that would come up. [laughter] i do not have children. really, i don't think that alzheimer's is the factor for that. you know, in the back of my there is some of that but at this point in my life, my husband and i, have not felt that need yet to have any kids and we haven't said we are not having kids we just don't have any yet.ot i don't know if that alzheimer's cloud is that subconsciously makes me feel like a i'm not rey for children but i don't feel like the alzheimer's has affected my decision. i know for some people that is a

factor because there is that chance of passing the gene. >> hello. can you hear me okay? my mom has a probable alzheimer's diagnosis and i was interested in the topic and i particularly like the combination of the macro context the personal story behind it. one of my areas of study in academia was public affairs so i'm wonky by nature and i don't know if either of you have guidance for average people like us to be more engaged in the

civic or policy arena and there are things that we could be doing to support our local alzheimer's organizations -- should be calling certain policymakers in advocating for more research dollars? are there key policymakers in washington or in madison or in minneapolis, st. paul that we might go to to try to up the pressure from the grassroots to correct some of the imbalance and research that you have identified? >> i would say probably the first things e we get involved with your local chapter of the alzheimer's association. there are really great resource of who to contact in terms of your specific legislators or government officials and other ways you can donate volunteer to get involved. i would also say -- >> i am wonky by nature to and i

would say that any type of lobbying of your own public officials frequent lobbying is helpful but the reason that a group the alzheimer's association and all aarp are valuable is because lobby groupv do know as lindsay mentioned to specifically to target and they would know if there were bills in the pipeline funding and the more support you have to find them the more influential they are and the more they have years. >> you give a quote about where the diseases and there's money for less money for things that embarrass people whether that was alcoholism or mental health and i think there is a sense about alzheimer's that people are uncomfortable dealing with it. my wife and i do act as

volunteers had we see people like that. i'm wondering if there is somehow a stigma even though you've described an entire genetic, biological pandemic and we think about the aids pandemic with equal issue of groups acting to fight the stigma and can you talk a little bit about repositioning or dealing with the discomfort when one is confronted with a mental decline and make them not willing to fight. >> do you want to address his first track. >> sure. i think one of the biggest things is were doing right now, talking about it. the more you talk about it in the more you get out there and say yes, this is alzheimer's and this person in my family has it the more you talk about it that stigma starts to go down and that is part of the goal of

myself and my siblings and why we want to do these things is to help decrease that stigma. the other thing i'd like to mention is it isn't just a stigma of mental illness. it is also the fear, especially if, for example, and that his family these are people who are still of working age. one of lindsay's aunt passed away did have long-term care insurance and that is becoming-t scarcer to get because insurance companies are ahead of this one and know it is expensive and is harder to get. if you do not have it, you are really in a lot of trouble the younger you are when this disease comes long because are afraid to say they have this diagnosis because they're afraid not be able to get insurance. the stigma goes away when we talk about it. it's the same with hiv. that was an excellent point. people speak up and act up and say this is something that makes me less than you.

this is you and this is me. i don't know who may have heard the news story a couple weeks ago and there was a pharmacist on capitol hill that said he has been filling alzheimer's medication for members of congress and he was asked to backpedal because -- right? what is the vacation there? if that's the case and something is wrong there. i would love this for someone who has those medications to say we will put hip a side and i have to take the medication. medication does not solve the disease but slows down your symptoms but it doesn't make it better. how about if we put funding into something that is making you better? >> five years ago i sat in a doctors office and listened as he explained another disease called lewy body dementia. i had never heard of it before the day. since then every time i turn

around very quietly someone is mentioned and i think robin williams died of that. are these parallel diseases and is there a whole family of others out f there in addition o alzheimer's and lewy body dementia that are very close together? how do we tackle these as a group, not just alzheimer's alone? >> that is a great question. yes, to answer the first part of your question yes, they are all similar in their cousins of each other. one of the doctors that i interviewed for this book had an interesting take on this and he said we know more about outerspace than we know about the inner workings of her own brain. it is very, very difficult to conduct brain research for a number of reasons, some biological and some related to money. how do we tackle it? spend more money on the funding.

scientists are like anyone else and they cannot work for you. for every great idea out there, every 30 great ideas, one might have funding and typically funding sources will go with the safest but the safest one might not be the groundbreaking one so the answer really does come back to funding and what drives our research. >> the question i have is is the research to suggest that our food supply perhaps makes the systems worse or causes it and do they stress eat certain things, as opposed to other things, because other foods might make it worse and i'm curious if there is research? >> there are a lot of recommendations like lifestyle modifications and things like that. eating a healthy balanced diet,

and i don't know anything in terms of food supply but, you know, eating the lean meats, fruits and vegetables, those kinds of general nutritional recommendations that here quite a bit and getting exercise like nikki mentioned before heart health is brain health. so anything healthy for the heart is healthy for the brain. doing cognitive challenges, customer puzzles, getting good sleep, stress reduction and there's a lot of those lifestyle things that are recommended to help with prevention. i don't necessarily know about specific foods by itself. >> the food supply i likewise do not know too much but i know one specific recommendation, emily said, with eating healthy is a cholesterol-lowering diet because there is believed to be aal link between one of the abnormal proteins in alzheimer'e and cholesterol production.

again, these are all very much fluid builds of research and as with cancer, for example, there are some genetic factors in cancer but environmental as well. same thing with all servers. >> are there ways that when someone does get alzheimer's or any other type of dementia i have seen, even with my own parents taking care of my grammar is, it comes to be a teacher role almost in a person wants to be independent and act like they used to but then you have the challenge of having to teach people things that they

knew before and what is the best way that you have seen to make a better, i guess. >> yeah, i think that is a tough thing. i think one of the biggest things is having patience. one of the things recommended is if someone is confused or in their world or they feel like it is 20 years earlier you go to them and go to the place where they are at and you live in their reality and it is hard sometimes have the patience. my dad is still doing very, very well and still working but i will call him on the phone and we talked 20 or 30 minutes and in that 30 minutes we have the same four or five conversations. they cycle and we say the sameut thing and forhe a while it tooke a while to get okay with that and not just like okay, dad, i've got to go to sit in those

conversations and have them a few different times because at some point the conversation will not be there. in terms of the teaching of things it is just taking a minute to step back and have that patience to be in the world and realize that even though you told them this 500 times they do not remember which is my best experience. >> lindsay has more first-hand experience that because of her father but i do know that it varies as anything from patienth to patient so some people become very agitated very easily and often one of the tragedies of alzheimer's is there it will awfully be that way with people they care the most, the spouse of the best friend and you have to be an have to have a thick skin to take that and remember that it is the disease and not you. and let them hating you.

it is easy to say but difficult to do and it's one of the cooler parts of the disease. >> my question goes along what you were just saying. could you talk and maybe you can both talk about support systems for caregivers because in my situation my sister-in-law developed alzheimer's in her early 60s and my brother retired early in order to care for her and it's a 24 hour a day job and in terms of supporting him when we live in different states do you have some advice or suggestions of who to contact

to provide that sort of support? >> again, i think another great resource for that would be the alzheimer's association. every area will have slightly different resources and i know where i live there is a couple nursing home in town that offered daytime respite services so if you have aired me to run or appointments you need to go to you can bring your love from their they will care for them during the day and you can get yourself a little break other places may have volunteer programs for things like that so that may the processes detect because they know the local school system back i would echo what lindsay said but thank you for your question because i think you touch on something

that is underappreciated side effect which is the toll on caregivers.is lindsay's grandma had five of her six children, her husband, her mother-in-law her brother-in-law, sister-in-law and several of her nieces and nephews affected this disease. and even though she did not personally have it it absolutely affected her and i think significantly impacted her heart health, the stress from the patient in a 24 hour situation that you describe is astronomical. friends who are in in a couple of hours helping, taking a person to do something if they are able to do that in those few

hours could bes a godsend to te person that is the caregiver and we don't have a full solution for that and as a society and you will see in some larger cities a lot more respite care and nursing homes except for memory care but i don't think it will be the need yet and i hope that if we solve the disease that need would not be there. >> just a couple of strands in reaction to the previous q&a in terms of coping with a loved one with the disease i remember there was an npr report about a

family, a young couple that had gone to help the wife's mother with her dementia and the son-in-law had a background in standup comedy and especially in spontaneous and improvisational comedy and he found that as you are saying, lindsay, going with the flow and using what the person living with the disease gives you in terms of memories and repetition and repetition and just go with it and that is a much better way of responding then i found myself my mom trying to refute some of the -- >> is hard not to do that. >> yes, it just doesn't work and just going with it like a standup comedian or improvisational comedian and the other was there was a project based in new york city that had

ties around the country called the alzheimer's poetry project and it's a way of helping people living with the disease as well as their caregivers understand what they are dealing with and tapping into the deep-rooted memories poetry and i know music serve the same function. i came to function in this very room where they did local poets and read some other pieces and the facilitator had people in the audience respond to that to some of those messages and themes and compose a collective poem together. it's really a nice way to remind caregivers that there are memories that are still alive and well that can be tapped into that can enrich the lives of the person living with the disease and give caregivers a sense that these people, is diminished as their cognitive capacities are, there is still richness in their

life a lot of memories that can be tapped and found very rewarding. it's alzheimer's poetry. >> thinking. >> one thing i wanted to mention in response to your earlier question about what can people here do to promote research there is actually a large research group at the university of wisconsin and the department on aging or institute of aging that is doing a lot of research on alzheimer's and they have a registry that includes children of people with alzheimer's as well as parents do not have dementia and i think that is something we can all do and sign up various testing and the way

to advance the state of knowledge. >> that is a great point and there are few such registries run the country and i know the institute in phoenix has alzheimer's prevention initiative and they have a registry relatedr' to that and because these are academic the problem irs mentioned earlier and you would worry about your status would be disclosed would be protected in a situation and you can -- as i learned at a speaking engagement over the summer you can actually find out through a home genetic test whether you carry a genetic predisposition for alzheimer's and this is not the same as what lindsay'ser family has.

this is a gene called a poe for and if you have two copies of it, one from each of your families you have a significantly elevated risk for allu servers. that is not the kind of thing that your family position typically is going to test you for or probably would testing for because there isn't a treatment for it so it's potentially very disturbing and lethal knowledge. in home genetic test there really isn't any filter there and no genetic counseling so a woman stood up in a q&a and said i had two copies of hp oh four and had heard genetic test and she said what do i do now? so, the reality is that we can now open that pandora's box in the privacy of her own home so our health system has not caught up with that yet the answer is

you might have to disclose that if you try to get insurance and do you want to know and she was only in her 30s and the risk was about as elevated as if you have the bcr hd for breast cancer and it's about the same risk so it is up there. you know, this problem is here and he's here to stay and not going away. i cannot emphasize that enough is a call to action for reason because everyone in this room will be touched by it and in my own biological family i'm not aware of anyone who wasas also a nurse and it is the most pressing issue to me anywhere. >> any other questions? thank you very much for coming and spending your time with us today. [applause]

>> thank you to them and thanks to all of you. nikki and lindsay will be out in the signing area if you have any other comments or want to get a book signed we will reconvene at 130. thank you so much. >> the wisconsin book festival continues now with journalist david. he offers his thoughts on how politicians misrepresent scientific findings. >> hello everyone. i'm connor, director of the wisconsin book festival and i want to thank you all for coming to see david today. before we get started i do want to think a couple of people this is the 50th anniversary of the wisconsin book